Monday, March 28, 2011
Connecting
Just after I was diagnosed, I met a girl through her blog, her name is Ann. Ann has been an inspiration and wonderful with answering all of my questions. She is local and I am so thankful that we met, she's a great lady with an amazing outlook. I also met Katie through her blog, Katie has inspired me a bit but even more than that, Katie has given me someone that I relate to. I cried for hours after I read her blog, not only because it broke my heart, but just like with Dr. Lavallee, she knew me, amazingly and oddly enough, our lives and EDS had taken much the same "path". Don't get me wrong, Katie's POTS has been far meaner to her than mine has, my heart almost breaks for her. "ALMOST"! You say? Yes, almost!
Katie is a teacher, she went from training for a 1/2 marathon to a cervical collar and wheel chair in less than 3 months. You think this stopped Katie? HECK NO!!! Katie has been in therapy since January and is also having Prolotherapy done. The Prolotherapy looks excruciating but she thinks it is helping. Something is helping her, she rarely wears her neck brace and has only used her wheelchair a couple of times in the past 2 months. We were giggling the other night on the phone, talking about how when we are at the grocery store, Target or anywhere else, if we get dizzy and have a POTS moment, we just sit or lay down. Yes, when your autonomic nervous system is "confused" like ours, it doesn't matter where you are or what you are doing, if you feel it coming on, you get "down" before it takes you "down"! I'm not embarrassed by it, someone with me may be but oh well, they'll get over it or not tag along to the store with me ever again.
Ann and Katie have been amazing for me. As informative as Dr. Lavallee was and as many questions as I asked, I still have about 250 new questions a day. Even after my diagnosis, I didn't realize exactly just how much this disease had taken it's toll on my body and life. I call EDS/POTS/LUPUS a singular disease because I consider EDS the big umbrella and the POTS and LUPUS fall under it. I am not an ignorant person, especially when it comes to the body. After college I went to massage therapy school and worked in healthcare for many years. Learning about the human body and mind is one of my many passions in life. Still, I honestly thought it was normal that people's feet hurt when they walk, I thought that everyone had excruciating knee pain when they sat for a while and got up. I thought that most every person in the world had pain when they woke up in the mornings. I thought that any person that moved furniture and such ached like there was no tomorrow. I did always think the issue with my ribs twisting and turning was odd and I hate the pain but I just thought that was a little more of Ila.
I hope nobody is offended by this story, but I think it is hilarious. A few months ago I got really bummed one day when I was getting dressed. I had excruciating back pain, like most days, and I had to go "out" for work that day. I do a lot of my job from home and am so thankful that my job allows me this luxury. As I was dressing, I caught a glimpse of myself in the mirror and was SHOCKED to no end! My left breast was sagging, big time! I never thought my breasts would sag, there's not enough of them to do that! Well, I was bummed but thought, "oh well, I am 35, gravity is taking it's toll but it needs to pull that right one as well so they will be evenly sagging". Well, after I met Ann and we talked, she was talking about her SI joint subluxing and popping out and I thought "ouch". Well, I just happen to have a good friend that is a D.O. and he and his family just happened to be visiting with us that weekend and I had him adjust my lower back because I was in excruciating pain. It felt amazing and even later, I was feeling like a million bucks, he adjusted my entire spine and pelvis. Ahhhh, heaven! I was getting in the shower that night and looked in the mirror at my sagging breast and it was not sagging at ALL. OH GOD! It hit me like a laughing loo loo, my breast was not sagging, my pelvis, hips and SI joint were "out" and that made my body "uneven"....therefore causing the appearance that my breast was sagging. How funny is that?
It's the little things like that which make me realize how much EDS has effected my body and I didn't even realize it. I truly thought everyone was pretty tired in the morning and that I was just really really lazy and couldn't wake up. Even when I woke up, it took me forever to get "moving" and it still does, but now I know why and what I have to do about it. I am so grateful to have Ann, Katie, Dr. Lavallee and last but certainly not least, my Stepmother, Betsy to share with, laugh with, cry with, research with, hope with and learn with.
Speaking of knowing what I have to do about it....I've gotta get moving, I am getting my little boy to the bus and going on a walk!
Katie is a teacher, she went from training for a 1/2 marathon to a cervical collar and wheel chair in less than 3 months. You think this stopped Katie? HECK NO!!! Katie has been in therapy since January and is also having Prolotherapy done. The Prolotherapy looks excruciating but she thinks it is helping. Something is helping her, she rarely wears her neck brace and has only used her wheelchair a couple of times in the past 2 months. We were giggling the other night on the phone, talking about how when we are at the grocery store, Target or anywhere else, if we get dizzy and have a POTS moment, we just sit or lay down. Yes, when your autonomic nervous system is "confused" like ours, it doesn't matter where you are or what you are doing, if you feel it coming on, you get "down" before it takes you "down"! I'm not embarrassed by it, someone with me may be but oh well, they'll get over it or not tag along to the store with me ever again.
Ann and Katie have been amazing for me. As informative as Dr. Lavallee was and as many questions as I asked, I still have about 250 new questions a day. Even after my diagnosis, I didn't realize exactly just how much this disease had taken it's toll on my body and life. I call EDS/POTS/LUPUS a singular disease because I consider EDS the big umbrella and the POTS and LUPUS fall under it. I am not an ignorant person, especially when it comes to the body. After college I went to massage therapy school and worked in healthcare for many years. Learning about the human body and mind is one of my many passions in life. Still, I honestly thought it was normal that people's feet hurt when they walk, I thought that everyone had excruciating knee pain when they sat for a while and got up. I thought that most every person in the world had pain when they woke up in the mornings. I thought that any person that moved furniture and such ached like there was no tomorrow. I did always think the issue with my ribs twisting and turning was odd and I hate the pain but I just thought that was a little more of Ila.
I hope nobody is offended by this story, but I think it is hilarious. A few months ago I got really bummed one day when I was getting dressed. I had excruciating back pain, like most days, and I had to go "out" for work that day. I do a lot of my job from home and am so thankful that my job allows me this luxury. As I was dressing, I caught a glimpse of myself in the mirror and was SHOCKED to no end! My left breast was sagging, big time! I never thought my breasts would sag, there's not enough of them to do that! Well, I was bummed but thought, "oh well, I am 35, gravity is taking it's toll but it needs to pull that right one as well so they will be evenly sagging". Well, after I met Ann and we talked, she was talking about her SI joint subluxing and popping out and I thought "ouch". Well, I just happen to have a good friend that is a D.O. and he and his family just happened to be visiting with us that weekend and I had him adjust my lower back because I was in excruciating pain. It felt amazing and even later, I was feeling like a million bucks, he adjusted my entire spine and pelvis. Ahhhh, heaven! I was getting in the shower that night and looked in the mirror at my sagging breast and it was not sagging at ALL. OH GOD! It hit me like a laughing loo loo, my breast was not sagging, my pelvis, hips and SI joint were "out" and that made my body "uneven"....therefore causing the appearance that my breast was sagging. How funny is that?
It's the little things like that which make me realize how much EDS has effected my body and I didn't even realize it. I truly thought everyone was pretty tired in the morning and that I was just really really lazy and couldn't wake up. Even when I woke up, it took me forever to get "moving" and it still does, but now I know why and what I have to do about it. I am so grateful to have Ann, Katie, Dr. Lavallee and last but certainly not least, my Stepmother, Betsy to share with, laugh with, cry with, research with, hope with and learn with.
Speaking of knowing what I have to do about it....I've gotta get moving, I am getting my little boy to the bus and going on a walk!
Since My Appointment
Since my appointment with Dr. Lavalle a couple of weeks ago my emotions have been a roller coaster. I have tried to collect medical records from years past, not only mine but those of my mother and paternal uncle as well. My mother died when I was 13. She was a nurse and had hepatitis. I always assumed and was told that hepatitis was how she died, but who knows, Papa went to check on her at her house one morning and found her dead. I all of a sudden started to consider the fact that maybe she had Vascular Ehlers-Danlos and that was what led to her death. I haven't found any medical info of hers yet but I will keep looking as time allows. My paternal Uncle died of a heart attack the day before he turned 31. I never knew him, not only was it before I was born, it was on my "fathers" side of the family. If you remember from previous posts, my Mother was not married when she had me and my Grandparents, Mama and Papa, adopted me when I was born. I met my "Father" when I was 16. Well, I got in touch with my "Uncle's" wife and talked with her about Donald's death. She gave me the information from the coroner's report and autopsy, his death was due to a weak pericardial muscle. Whew, that was good news, nothing was documented that even suggested an aneurysm or dissection.
I don't know what happened to me in the past few days, I seem to be having a hard time "wrapping my head around" the fact that I have a rare disease that there is no cure for. This is me, the lady that was ecstatic when the doctor told me that there "is no magic pill" and that he could not fix me but that I can "fix" myself. I bounced around for 2 weeks singing "If it is to be, it is up to me!" What happened? I think reality is starting to set in. Now I am thinking, "Oh wow! I can't believe this! I knew something was very wrong but I never imagined it was Ehlers-Danlos, POTS and Lupus!" My "fix" is physical therapy and lots of time in the gym. Now since I stopped gymnastics, my time in the gym was spent walking through to go to the sauna or maybe riding a bike for a few minutes. Big changes are taking place in my life and they are life-long changes! I am excited about these changes but man oh man, I am overwhelmed as well!
I don't know what happened to me in the past few days, I seem to be having a hard time "wrapping my head around" the fact that I have a rare disease that there is no cure for. This is me, the lady that was ecstatic when the doctor told me that there "is no magic pill" and that he could not fix me but that I can "fix" myself. I bounced around for 2 weeks singing "If it is to be, it is up to me!" What happened? I think reality is starting to set in. Now I am thinking, "Oh wow! I can't believe this! I knew something was very wrong but I never imagined it was Ehlers-Danlos, POTS and Lupus!" My "fix" is physical therapy and lots of time in the gym. Now since I stopped gymnastics, my time in the gym was spent walking through to go to the sauna or maybe riding a bike for a few minutes. Big changes are taking place in my life and they are life-long changes! I am excited about these changes but man oh man, I am overwhelmed as well!
Saturday, March 26, 2011
Blog 3...My Doctors visit
I feel like I could ramble on for a blog the size of an encyclopedia but I won't do that to the readers that are patient with my EDS ramblings. Instead of trying to fill in details, I'll just straight to the glorious day I met Dr. Mark Lavallee!
I was so nervous but excited. I felt like I was going on a first date as I was getting ready for my appointment. I didn't have much time, Andy was in the Philippines for 2 weeks and this just so happened to take place during his trip. So, I didn't just have to get myself ready, I had to get the kids ready and to school as well. So, I walked into the office and got registered, the receptionist was Rose Marie and she was great! Less than 10 minutes after my arrival a nurse named Josh came and asked me to come to the back with him. On the way back I reminded him that we spoke on the phone a few weeks ago and he reminded me that I have a rather unforgettable southern drawl that is recognized very easily. Josh took me into the room and we talked alot about my medical history and such then he took my vitals. He was very nice and I enjoyed talking with him, I was very at ease so far. When Josh left the room I got butterflies galore. I started to look around the room in awe at all of the pictures of Dr. Lavallee with athletes he'd helped "restore". To my left, there was a letter that a little girl, a gymnast wrote him, along with it there was a photo. In her letter she thanked Dr. Lavalle for helping her heal her injury which allowed her to continue in her gymnastics. That is when I lost it, I cried like a baby and I could not stop. Well, not until I heard a knock on the door.
"KNOCK KNOCK, DOC DOC" were the words that landed humorously on my ears. "OH GOD I AM CRYING". As Papa would say "I dried it up, quick, fast and in a hurry", muttered a happy "Come in" and the next thing I knew I was eye to eye with Dr. Lavallee. I wanted to hug him and we'd hardly spoken 3 words. Dr. Lavallee asked me some pretty open-ended questions that I loved answering, kinda just telling him what had been going on with me. From those, he started to ask more direct questions that I was so happy to answer. Something very odd about those questions, it seemed like he was asking the questions because he'd read a book about me and my life and wanted to know more and understand better. There were so many times that I fought tears...I mean I fought them like Samson fought Goliath, I didn't want to cry in front of this man! Inside I was bouncing like Tigger, a very bouncy tigger that had just had his first Red Bull! Dr. Lavallee did the Beighton Scale Test on me....9/9, ofcourse, I would have been a 14 if it went that high! He examined my hypermobile joints and I knew that Dr. Straniero was right when he said "Dr. Lavallee will be impressed and he's not impressed very often". I even did my "circus tricks" for Dr. Lavallee and he didn't yell at me. Dr. Lavallee seemed to have so many answers! I wanted to do cartwheels!
Dr. Lavallee was actually giving me answers to questions that I'd struggled with for so long. My mind was swirling like a tumbleweed in a windstorm! Wow! The headaches could be explained, the backaches, the excruciating knee pain and even the fatigue. Geeez, then he told my why my legs look like a purple polka-dotted popsicle at times and told me he was referring me to a cardiologist that he works closely with. He knew about my dizziness, nausea and everything else I told him about. The things that he didn't know as much about as he would have liked to, he referred me to someone that would...Like Dr. Haleran. He explained that he could relate to what I was experiencing and told me a little about his battle with Ehlers Danlos.
This man is a miracle y'all. God picked the perfect person when he picked Mark Lavallee to have Ehlers Danlos Syndrome. Ya wanna talk about inspiration, he'll give you a double-dose every time you talk with him. He is so determined to beat down EDS and if you can talk with him and not feel the same way, you're slam retarded! He works daily at beating this disease! He may do research and of course he helps EDS patients, but that's not what I am referring to. Dr. Lavallee works out in the gym regularly, it's as much a part of his life as eating and sleeping.
Dr. Lavallee looked at me and said "there is no magic pill I can give you, I can't fix this for you but you can!" At this point I wanted to get up and dance! He explained to me that doing gymnastics for so long built great muscle mass that had stabilized my joints for so long. The key to beating this disease is to get that muscle mass back. Since my ligaments and tendons don't "support" and protect my joints, I have to rely on my muscles to do that job. He explained that the first weeks of Physical Therapy and working in the gym would be very very painful but stressed the importance of hanging in there. I felt like Dr. Lavallee was giving me the tools to be successful in beating EDS. What an amazing feeling! He also explained to me that in a year of utilizing these awesome tools and his guidance that I would be a new person...Right down to my ADD being better! I never realized that pain is distracting...now I think about it and think "DUH Ila, come on girl!"
Dr. Lavallee walked me through the "plan" and told me to call him if I needed him. At first I thought "why in the world isn't he making me a follow-up appointment?" Now I know it's because there was no doubt in his mind that he'd hear from me on a regular basis! :O) At one point I think if I'd been him I would have been so frustrated at me, he may have been but never showed it! I swear, every time I started to walk out the door, I'd think of "one more question", I must have said "oh and one more thing" 10 times (that's a conservative number). That man must have the patience of Job because he answered every question as if it were my first. I can't explain to you the excitement I felt in talking to him. I take Adderall for my ADD and I was so bouncy and giddy that when I got home I checked to see if I accidentally took 2 that day....I didn't! I felt like I could have jumped over the moon or like Tigger on Red Bull. I felt that good that someone actually understood, not just medically but personally....Dr. Lavallee KNEW and that my friends is a MIRACLE!!!!
I was so nervous but excited. I felt like I was going on a first date as I was getting ready for my appointment. I didn't have much time, Andy was in the Philippines for 2 weeks and this just so happened to take place during his trip. So, I didn't just have to get myself ready, I had to get the kids ready and to school as well. So, I walked into the office and got registered, the receptionist was Rose Marie and she was great! Less than 10 minutes after my arrival a nurse named Josh came and asked me to come to the back with him. On the way back I reminded him that we spoke on the phone a few weeks ago and he reminded me that I have a rather unforgettable southern drawl that is recognized very easily. Josh took me into the room and we talked alot about my medical history and such then he took my vitals. He was very nice and I enjoyed talking with him, I was very at ease so far. When Josh left the room I got butterflies galore. I started to look around the room in awe at all of the pictures of Dr. Lavallee with athletes he'd helped "restore". To my left, there was a letter that a little girl, a gymnast wrote him, along with it there was a photo. In her letter she thanked Dr. Lavalle for helping her heal her injury which allowed her to continue in her gymnastics. That is when I lost it, I cried like a baby and I could not stop. Well, not until I heard a knock on the door.
"KNOCK KNOCK, DOC DOC" were the words that landed humorously on my ears. "OH GOD I AM CRYING". As Papa would say "I dried it up, quick, fast and in a hurry", muttered a happy "Come in" and the next thing I knew I was eye to eye with Dr. Lavallee. I wanted to hug him and we'd hardly spoken 3 words. Dr. Lavallee asked me some pretty open-ended questions that I loved answering, kinda just telling him what had been going on with me. From those, he started to ask more direct questions that I was so happy to answer. Something very odd about those questions, it seemed like he was asking the questions because he'd read a book about me and my life and wanted to know more and understand better. There were so many times that I fought tears...I mean I fought them like Samson fought Goliath, I didn't want to cry in front of this man! Inside I was bouncing like Tigger, a very bouncy tigger that had just had his first Red Bull! Dr. Lavallee did the Beighton Scale Test on me....9/9, ofcourse, I would have been a 14 if it went that high! He examined my hypermobile joints and I knew that Dr. Straniero was right when he said "Dr. Lavallee will be impressed and he's not impressed very often". I even did my "circus tricks" for Dr. Lavallee and he didn't yell at me. Dr. Lavallee seemed to have so many answers! I wanted to do cartwheels!
Dr. Lavallee was actually giving me answers to questions that I'd struggled with for so long. My mind was swirling like a tumbleweed in a windstorm! Wow! The headaches could be explained, the backaches, the excruciating knee pain and even the fatigue. Geeez, then he told my why my legs look like a purple polka-dotted popsicle at times and told me he was referring me to a cardiologist that he works closely with. He knew about my dizziness, nausea and everything else I told him about. The things that he didn't know as much about as he would have liked to, he referred me to someone that would...Like Dr. Haleran. He explained that he could relate to what I was experiencing and told me a little about his battle with Ehlers Danlos.
This man is a miracle y'all. God picked the perfect person when he picked Mark Lavallee to have Ehlers Danlos Syndrome. Ya wanna talk about inspiration, he'll give you a double-dose every time you talk with him. He is so determined to beat down EDS and if you can talk with him and not feel the same way, you're slam retarded! He works daily at beating this disease! He may do research and of course he helps EDS patients, but that's not what I am referring to. Dr. Lavallee works out in the gym regularly, it's as much a part of his life as eating and sleeping.
Dr. Lavallee looked at me and said "there is no magic pill I can give you, I can't fix this for you but you can!" At this point I wanted to get up and dance! He explained to me that doing gymnastics for so long built great muscle mass that had stabilized my joints for so long. The key to beating this disease is to get that muscle mass back. Since my ligaments and tendons don't "support" and protect my joints, I have to rely on my muscles to do that job. He explained that the first weeks of Physical Therapy and working in the gym would be very very painful but stressed the importance of hanging in there. I felt like Dr. Lavallee was giving me the tools to be successful in beating EDS. What an amazing feeling! He also explained to me that in a year of utilizing these awesome tools and his guidance that I would be a new person...Right down to my ADD being better! I never realized that pain is distracting...now I think about it and think "DUH Ila, come on girl!"
Dr. Lavallee walked me through the "plan" and told me to call him if I needed him. At first I thought "why in the world isn't he making me a follow-up appointment?" Now I know it's because there was no doubt in his mind that he'd hear from me on a regular basis! :O) At one point I think if I'd been him I would have been so frustrated at me, he may have been but never showed it! I swear, every time I started to walk out the door, I'd think of "one more question", I must have said "oh and one more thing" 10 times (that's a conservative number). That man must have the patience of Job because he answered every question as if it were my first. I can't explain to you the excitement I felt in talking to him. I take Adderall for my ADD and I was so bouncy and giddy that when I got home I checked to see if I accidentally took 2 that day....I didn't! I felt like I could have jumped over the moon or like Tigger on Red Bull. I felt that good that someone actually understood, not just medically but personally....Dr. Lavallee KNEW and that my friends is a MIRACLE!!!!
Continued....
So, the wait was on, I was waiting for Dr. Lavallee's staff to call and set up an appointment for me to see him. They called in January, I'll never forget that day. We were in Memphis for Andy's best friends wedding, that would make it mid-December that they called. I was so disappointed when they set my appointment for April. I remember thinking "I don't want to wait until April to have answers". Well, I decided that I had to be patient! The Heinz commercial used to say "The best things come to those who wait"! In February as I was filling out paperwork for Dr. Lavallee, I called to ask a question. I spoke with his nurse Josh and he told me that I could actually come in the second week of March, I was so excited!
I was (am) so sick of calling my best friend, Valerie, and her husband Matt and asking questions about what they "think" might be wrong with me. The past few years have been filled with countless phone calls that many times consisted of nothing more than questions like "do you think this is normal?" and "How do you feel when you wake up in the mornings?" You know, probably the normal questions that people that know something is wrong but don't know what ask. Valerie, like me, has a degree in Biology and Chemisty (but she's a heck of a lot smarter) and Matt, her husband is a nurse. Matt's not just any nurse, he's one of the super nerds that we all hate! You know, they read something one time or just merely sleep on the book and retain all of the information for their entire lives. When Dr. Straniero mentioned EDS to me that day in his office, I called Val and Matt and they immediately started to research. When Val called me back she was blown away "Ila, this explains you to a T, I think they wrote this description about you". That's when I kinda "knew" I had EDS, yet, I had no clue.
My life is a very interesting one, people that don't know me or my family situation, those outsiders looking in, may call it dysfunctional...I call it BLESSED! I'll expound on this on my next blog, it is very interesting, so don't miss it!
The reason I bring up my "life" as being very interesting is because I believe that God puts people into our lives for reasons that we can't even imagine. I met my biological father when I was 16. My maternal grandparents adopted me at birth, I didn't meet my "father" to find a Daddy, I already had the best Daddy in the world, I called him "Papa". I have always been a curious person, I like to know the answers and I love to investigate to find them. Research is on the top of my list as things I love to do! Well, we found my "father" and I met him the day after Thanksgiving in 1992. He is an interesting fellow to say the least and until this day I have very little contact with him. When I met my father, I didn't necessarily fall in love with him but I instantly fell in love with my "Stepmother" and with my 1/2 brother. My Stepmother's name is Betsy and we just had a "click" from the second we met. I always tried to visit Gerald (my father) when I knew Betsy would be there. Betsy is a Doctor, so she was often on call or busy with patients. In 2000 I called and talked to Betsy one night and she told me that she divorced Gerald and I was so sad....I didn't want to loose Betsy, I loved her more than I ever even let her know.
Well, about 2002 I would call Gerald and ask him how I could possibly get in touch with Betsy and he never cared to share that information. He was to busy bad-mouthing her and talking about how crazy she was. I looked and looked and we moved to Europe for 4 years in 2005, I just gave up. When we got back I asked him again and he said she was in Washington State, I scoured Washington State and no Betsy. Well, one night a few months ago, I was playing on Facebook, where I had looked numerous times before and I found her. I sent an email, realized before she even got that email that she was still in Florida and I could not help but let my fingers do the walking. I called Betsy with tears streaming down my little face, I just could not hold back the emotion. When she answered and heard that it was me, I think she felt the same way. That night we talked for hours, catching up and just being giddy that we were on the phone together! Toward the end of our conversation Betsy mentioned that she lives in excruciating pain and I said "Betsy, what in the world?" I about wet my pants when she said "I have Ehlers Danlos"! I squealed "I do too!!!!" and she whispered a calm "I know". "You what???" I asked! She told me that she was 99% sure I had EDS the day we met and my father and I excitedly shared our "circus tricks" that we could both do because of hyper-mobility. Gerald has EDS as well but his is asymptomatic, lucky man! So, Betsy and I talked about EDS for a long time....She talked, I listened! Betsy is an incredibly intelligent woman and compassionate Doctor. I was just so thankful that I had someone that I love so much that could relate to me and me to her.
Even talking to Betsy and hearing her tell her EDS stories and experiences did not prepare me for what I was about to learn.
To Be Continued in #3.....
I was (am) so sick of calling my best friend, Valerie, and her husband Matt and asking questions about what they "think" might be wrong with me. The past few years have been filled with countless phone calls that many times consisted of nothing more than questions like "do you think this is normal?" and "How do you feel when you wake up in the mornings?" You know, probably the normal questions that people that know something is wrong but don't know what ask. Valerie, like me, has a degree in Biology and Chemisty (but she's a heck of a lot smarter) and Matt, her husband is a nurse. Matt's not just any nurse, he's one of the super nerds that we all hate! You know, they read something one time or just merely sleep on the book and retain all of the information for their entire lives. When Dr. Straniero mentioned EDS to me that day in his office, I called Val and Matt and they immediately started to research. When Val called me back she was blown away "Ila, this explains you to a T, I think they wrote this description about you". That's when I kinda "knew" I had EDS, yet, I had no clue.
My life is a very interesting one, people that don't know me or my family situation, those outsiders looking in, may call it dysfunctional...I call it BLESSED! I'll expound on this on my next blog, it is very interesting, so don't miss it!
The reason I bring up my "life" as being very interesting is because I believe that God puts people into our lives for reasons that we can't even imagine. I met my biological father when I was 16. My maternal grandparents adopted me at birth, I didn't meet my "father" to find a Daddy, I already had the best Daddy in the world, I called him "Papa". I have always been a curious person, I like to know the answers and I love to investigate to find them. Research is on the top of my list as things I love to do! Well, we found my "father" and I met him the day after Thanksgiving in 1992. He is an interesting fellow to say the least and until this day I have very little contact with him. When I met my father, I didn't necessarily fall in love with him but I instantly fell in love with my "Stepmother" and with my 1/2 brother. My Stepmother's name is Betsy and we just had a "click" from the second we met. I always tried to visit Gerald (my father) when I knew Betsy would be there. Betsy is a Doctor, so she was often on call or busy with patients. In 2000 I called and talked to Betsy one night and she told me that she divorced Gerald and I was so sad....I didn't want to loose Betsy, I loved her more than I ever even let her know.
Well, about 2002 I would call Gerald and ask him how I could possibly get in touch with Betsy and he never cared to share that information. He was to busy bad-mouthing her and talking about how crazy she was. I looked and looked and we moved to Europe for 4 years in 2005, I just gave up. When we got back I asked him again and he said she was in Washington State, I scoured Washington State and no Betsy. Well, one night a few months ago, I was playing on Facebook, where I had looked numerous times before and I found her. I sent an email, realized before she even got that email that she was still in Florida and I could not help but let my fingers do the walking. I called Betsy with tears streaming down my little face, I just could not hold back the emotion. When she answered and heard that it was me, I think she felt the same way. That night we talked for hours, catching up and just being giddy that we were on the phone together! Toward the end of our conversation Betsy mentioned that she lives in excruciating pain and I said "Betsy, what in the world?" I about wet my pants when she said "I have Ehlers Danlos"! I squealed "I do too!!!!" and she whispered a calm "I know". "You what???" I asked! She told me that she was 99% sure I had EDS the day we met and my father and I excitedly shared our "circus tricks" that we could both do because of hyper-mobility. Gerald has EDS as well but his is asymptomatic, lucky man! So, Betsy and I talked about EDS for a long time....She talked, I listened! Betsy is an incredibly intelligent woman and compassionate Doctor. I was just so thankful that I had someone that I love so much that could relate to me and me to her.
Even talking to Betsy and hearing her tell her EDS stories and experiences did not prepare me for what I was about to learn.
To Be Continued in #3.....
Friday, March 25, 2011
Hello, I am Ila and I have EDS
Hey y'all! Welcome to my blog about my journey with Ehlers Danlos Syndrome. This is a disease that is so little known, when I type "Ehlers Danlos" I get a misspelled word alert! That's quite alarming!
I have always been EXTREMELY double jointed, until I had our first child, I could lay on the floor on my tummy, arch my back, throw my head back and suck my toes. Yes, I could make my body into a circle! I was always called bow-legged and have been told thousands of times that I have no bones and that I was as flexible as a cooked noodle.
From the age of 3 until close to 20, I was an avid gymnast. I loved gymnastics and my coaches were all so amazed what I could do with my body. My flexibility actually hurt my gymnastics ability a lot. Literally! I always seemed to get hurt on the balance beam and I was terrified of that thing! I hated beam sets, I knew I was going to get hurt. Finally, when I got hurt the last time, Papa let me "give it up". Whew! I never stopped tumbling though! I have always been the person to do cartwheels or back flips when excited and I do like to do my tricks! Tricks? Yes, I can do all kinds of weird things with this oh so stretchy body of mine and it feels great to do them!
I never knew that my double-jointedness/hyper-mobility would cause any issues or that any issues in my body caused it. I just thought it was the way God made me and that it was just a little bit more about Ila that made people say "girl, you are 1 in 1,000,000! Other than having actual injuries, the first time I remember being in random, extreme pain was when I was about 22. I was dissecting a cat in an anatomy class and when I started to look up from the cat, I could not lift my head. It was excruciating and stayed that way for almost a week. I saw several doctors, one wanted to do surgery and I walked out. I finally saw a chiropractor in Augusta, Georgia that explained to me that my Atlas and Axis were turned and dislocated at a very odd and dangerous angle. She didn't adjust me then, I did therapy with her several times, relaxed in Epsom Salts several times a day, took loads of Advil and one day it was just fine. Just like that pain came, it left.
My next episode came years later, we lived in Heidelberg, Germany and I was the Director of Customer Service Training for that region of Europe. Andy was in Iraq for his 3rd trip to the Sand box and our oldest son was 2. One day my ribs started hurting, it was an odd pain, hard to breathe and I could not get comfortable. After I had everything from my brain to my sacrum scanned, poked and prodded, I was told that I was crazy! We already knew that but I knew something strange was happening to my body. My boss told me to go to her massage therapist and I politely declined. I am a licensed massage therapist and I was convinced that the massage from her therapist would be pretty bad, just like most others. Well, I finally broke down and went to see Ricky Welch, her massage therapist. Folks, I was so wrong in prejudging this man, he was and is AMAZING! Ricky massaged me and by the end of the 1/2 hour massage, every joint in my body had been adjusted. Ricky told me that I had 6 discs that were "out" and 2 ribs that were causing my major discomfort. I saw Ricky once a week until we moved from Germany to Belgium. I told him it was his job to "keep me in line"!
After we had our second son, in 2008 I started to notice some very weird things but they didn't rear their ugly heads very often. I remember sitting on the porch one night, talking to my dear friend Jessica and asking her; "Do your toes ever tingle for no reason?" She laughed and said no. Then I noticed that I would get very dizzy sometimes when I stood up and I would be freezing cold but sweating like a whore in church. I am a health buff and love to study and learn about the human body so this really perplexed me. I chalked it all up to Post- baby hormones and loosing 75 pounds in less than 10 months. It did bother me that I was so tired all of the time and to hear Andy tell it, I gave a new meaning to the word bitch.
When we moved back to the states for Andy to go to graduate school, I was so happy to be back in America! I won't tell the long, nightmare story here but we wound up in a house that we rented on Craigslist from a very reputable person (yeah right) and it turned out really bad in many ways. The house was loaded with lead, arsenic, mercury and cadmium and the people that owned the house had construction done while we lived there. Well, our oldest son got really sick from the house and I did as well. Our illness started almost immediately after we moved in, less than a month from moving in, we were both up to our ears in feeling yucky. Our son developed psoriasis on the backs of his hands and in his scalp so bad that I could not find a soul to cut his hair. He would wake up some mornings with his face covered in blisters that resembled chicken pox. As for me, I had excruciating headaches regularly, something I had never experienced. I was unbearably tired most of the time and the dizzy, sweaty and cold episodes became quite regular. I started to get random sores in my mouth and nose and I felt like crap most of the time.
I told my Primary doctor about this over and over. I would beg her to please do blood work, tests and anything else that might help us know what was wrong with me. I was told again and again that I was just depressed, that doesn't need blood-work and that I had 2 little boys, I should expect to be tired. I take Adderall for ADD and she started me on Cymbalta for depression. I told this doctor that I was not depressed, that I was sick and she didn't believe me, she'd up the dose of depression meds. Well, we found out the environment in the house was what was making Cole sick, so we moved. AHHHHHH! We moved! It was great! We found an amazing house, way south of town, with great landlords, lots of room, a fantastic in ground pool and no worries of yuck where we live! When we moved out of the house, Cole, our son, was physically better in less than a month, his skin condition cleared and has never returned! Well, I started to get sicker and sicker, the joint and back pain was excruciating, the fatigue was unbearable and those bumps would just appear from nowhere in my mouth and nose. I would go to the Dr. for those every time they would appear because my Dr. said they were MRSA and that alarmed me because of our children. I should have listened to my best friend Val when she and her brainy husband Matt would say "THOSE ARE NOT MRSA". But, I only listen when I want to and I guess I didn't want to listen. After all, what else could cause the odd bumps!
Well, it just so happened that I got the "bumps" one day when I could not see my primary care doctor and was worked in to see her partner. I loved him right away, he reminds me of my cousin Milton that is also a D.O. Well, he asked me what was going on and I said "these bumps that SHE calls MRSA are back so I guess I need more Cipro. Well, Dr. Wonderful Robert Kaiser took one look at the bumps and said "I'm ordering blood-work, that's not MRSA". I was SOOOO excited. We talked about the fatigue, weight gain, joint pain, dizziness and just about everything else that had bothered me in the past year or so. When the bloodwork came back, he referred me to a rheumatologist because my ANA test came back positive. My rheumatologist is a great man, Dr. Nick Staniero, I think he looks like Tim Allen and he is just as funny and fun-loving. The first day I saw Dr. Strainero he said "you may have Lupus, we'll have to do another panel but I am positive that you have Ehlers Danlos Syndrome so I am going to refer you to Dr. Mark Lavallee." He told me that the EDS may be causing ALL of this! Well, the blood work came back long before I had my appointment with Dr. Lavallee and it did confirm that I have Lupus. My ANA isn't sky-high but my Anti RNP was pretty elevated. Dr. Straniero told me to see him in 2 months, start the Plaquenil and to consult with Dr. Lavallee, he promised that I'd really like Dr. Lavallee...I wasn't so sure. I just knew I was about to be sent to ANOTHER Doc that thought I was some crazy, whining, nut that suffered from hypochondriasis. After all, that is what my family doctor, along with my Aunt had convinced me of.
TO BE CONTINUED...
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